1 Consumer Directed Community Supports Survey Minnesota Governor's Council on Developmental Disabilities May 2002 2 MarketResponse International This project was financed in part by grant number G0001MNBS24 and 90DF005601 from the Department of Health and Human Services, Administration on Developmental Disabilities, under provisions of Public Law 106-402. Content of this project does not necessarily reflect the position or policy of the Administration on Developmental Disabilities or the Minnesota Department of Administration. 3 MarketResponse International I. Table of Contents Page I. Table of Contents . . . . . . . . . . . . . . . . 3 II. Executive Summary. . . . . . . . . . . . . . . . 4 III. Project Overview. . . . . . . . . . . . . . . . 6 IV. Overall Satisfaction with CDCS Program . . . . . 8 V. Program Benefits. . . . . . . . . . . . . . . . .21 Appendix: Respondent Profile. . . . . . . . . . . . 29 4 MarketResponse International II. Executive Summary 5 MarketResponse International II. Executive Summary The Consumer Directed Community Supports (CDCS) program has been very successful and highly appreciated by its participants -- 93% are satisfied with the overall program. Participants' satisfaction is driven mostly by their relationship with their county social services department, as well as their belief that the program is flexible, allocates money better within the system, and decreases their overall stress level. CDCS is clearly the best option that has come along for individuals with developmental disabilities who have access to a support network of family and friends needed to successfully participate. The program should continue to expand to the rest of the counties in the state, as well as to groups not currently participating in the program. This does not mean, however, that the program cannot be improved. There are dramatic differences in participant satisfaction and in the ways that the program has been implemented across the counties. Counties have identified inconsistencies in their approaches, but have responded to this issue mainly by increasing the guidelines and limiting the flexibility of the program. The counties need to establish a model that provides consistency but maintains the individual's self direction opportunities. Keys to maintaining CDCS as a successful program are maintaining flexibility and keeping the program simple and understandable for participants of all abilities, cultures and languages. 6 MarketResponse International III. Project Overview 7 MarketResponse International III. Project Overview - Survey Process - In April, 2002, 2,444 survey questionnaires were mailed to individuals participating in the Consumer Directed Community Supports (CDCS) program offered by the Minnesota Department of Human Services (DHS). Addresses were provided by the DHS, and questionnaires were addressed to the individual participants -- at the addresses to which DHS-related, CDCS financial documents are sent for them. Program participants were informed that the survey was confidential. There was no method employed to track an individual response to a particular individual. 650 surveys were returned for an overall response rate of 27%. 53 surveys were returned for an incorrect address or addressee not known. The survey was developed based on interviews with stakeholders in themCDCS program: county social services managers, county case managers / social workers, fiscal intermediaries, and individuals with a developmental disability and their families. Additionally, comments and quotes in this reports are supplemented by information gathered in these personal interviews. 8 MarketResponse International IV. Overall Satisfaction 9 MarketResponse International IV. Overall Satisfaction with CDCS Program - Summary - • CDCS has changed people's lives: It is clear that CDCS is a very powerful program that has dramatically changed the lives of many of its participants and should be continued and expanded. • Satisfaction and Likelihood to Recommend rated highly: 93% of CDCS participants are satisfied with the program, and 88% are more than somewhat likely to recommend this program to a friend who finds him/herself in a similar situation. This means that knowing what they know about this program, these people believe that it is the best option out there for individuals and families with developmental disabilities. • Most participants' expectations have been met: 73% of CDCS participants say that the program has more than met their expectations. This is a slightly lower number than for the other questions, but it is still strong. The distribution of answers on this question was much broader, however -- with 27% of participants saying that the program has merely met or has failed their expectations. • CDCS has significant opportunities for improvement: From both the quantitative and qualitative analysis, it is clear there are dramatic differences in the ways this program has been implemented by the various counties and fiscal intermediaries. This has created inconsistencies in decision making and put pressure on the individual and family to find ways to successfully work within the system to make this program meet their needs. • The flexibility of the program is in jeopardy: A quality program should strive to eliminate inconsistencies in delivery. The counties have identified this need and recognize inconsistency in their decision making. The general response from the counties, however, has been to add restrictions. Taking away this flexibility will eliminate the most inportant benefit fo this program and some participants have already begun to experience frustration with this. (See driving factors of overall satisfaction). 10 MarketResponse International IV. Overall Satisfaction with CDCS Program - Total Survey Population - Overall Satisfaction with CDS Program Overall, respondents are satisfied with the Consumer Directed Support Program, with 93% giving it a rating of "5", "6" or "7" on a 7-point scale. The CDCS program is a very emotional topic for some of those involved, and there is a great deal of concern expressed by some families about the direction and future of the program; as well as a fear that it might be taken away by public officials. 11 MarketResponse International Likelihood to Recommend CDS Program IV. Overall Satisfaction with CDCS Program - Likelihood to Recommend - Total Survey Population - Likelihood to recommend a program to a friend in a similar situation is another good indicator of overall satisfaction. Respondents seem very willing to recommend other people sign up for the CDCS program, with 88.1% giving it a rating of "6" or "7" on a 7-point scale. 12 MarketResponse International Has CDS met expectations set by County IV. Overall Satisfaction with CDCS Program - Expectations - Total Survey Population - Meeting participants' expectations depends heavily on the county's ability to set the individuals' expectations for participation appropriately. While these numbers are not as high as the overall satisfaction or likelihood to recommend ratings, it appears that, in general, counties are doing a good job meeting participants' expectations. 73% of respondents indicated that the CDCS program has more than met expectations set for them by their case manager or county social services department. 13 MarketResponse International IV. Overall Satisfaction with CDCS Program - Problem Definition Tree Representation - The Problem Definition Tree Representation (see appendix) is an analysis that groups respondents into clusters that represent the best explanation of their responses to the overall satisfaction question based upon their responses to other questions in the survey. This analysis gives us an indication of which questions are most closely related to a respondent's overall satisfaction. Questions taken into consideration for this analysis were: - Consumer Directed Supports questions related to quality of life, environment, flexibility, staffing, individual development, and the system - Overall satisfaction questions for the county social services, county case manager, and fiscal intermediary - Overall satisfaction questions for independence, productivity, integration, inclusion, and self-determination 14 MarketResponse International IV. Overall Satisfaction with CDCS Program - Driving Factors - From this analysis, it is clear that the most important factor in determining the overall satisfaction with the program, is the participant's overall satisfaction with his/her county social services department. Other contributing factors include the participant's agreement that - the program provides more flexibility, - money is being better allocated, - and the program has reduced the participant's/family's stress levels. These factors combine to explain 50% of the variance in overall satisfaction responses (which is good for this type of analysis). If a person agrees with these statements, he/she is likely to have higher overall satisfaction. 15 MarketResponse International IV. Overall Satisfaction with CDCS Program - Driving Factors - These three factors (flexibility, better allocation of money, and stress reduction) had relatively highly rated responses -- with participants agreeing that these are benefits that have been realized through the CDCS program. However, if a person tends to disagree with these statements, he/she is likely to have much lower overall satisfaction. For example, if a participant rated his/her overall satisfaction with county social services as a "7" out of 7, and rated his/her level of agreement with the program providing flexibility as a "5" out of 5 -- the average rating for overall satisfaction for respondents who answered similarly(Group 7) was an extremely high 6.9 out of 7.0. On the other hand, if a participant rated his/her overall satisfaction with county social services anywhere from "1" to "5" out of 7, and rated his/her level of agreement with the program providing flexibility as anywhere from "1" to "3" out of 5 -- the average rating for overall satisfaction for respondents who answered similarly (Group 1) was a relatively low 4.0 out of 7.0. 16 MarketResponse International IV. Overall Satisfaction with CDCS Program - Driving Factors - Flexibility - The program has given me more flexibility to meet my specific needs The term "Consumer Directed" implies that the individual will have some control over how money will be spent, rather than some sort of government agency, social worker, or institution making all the decisions regarding therapies, living arrangements, activities, education, etc. for the individual or family. One of the greatest benefits that we heard from program participants was CDCS's ability to give people the power to make decisions according to their specific needs. The [old] system was trying to fit a square peg in a round hole. It was designed for people with obvious physical disabilities. CDCS has helped us design something to fit the specific needs of our child -- you don't have to deal with a bunch of stuff that isn't quite right. People who are not as satisfied with the flexibility given them by the program, are likely upset by a perception that the implementation of the program has moved away from the original idea of self-determination, which was intended by the program. In spirit, the CDCS program is on the forefront of what social care should be. The administration of it is not following the spirit, however. The county doesn't want the parent to make choices. They give "guidelines" and caps and we are back to the original waiver situation where you are spending money on things you don't need. The county is saying "we know what's right for you - you come begging to us." The program was designed to promote selfdirection and individual planning. It doesn't resemble its intent. You can file an appeal, but it's complicated. We've had three different sets of guidelines in the past year and the fourth is on the table. They keep excluding things. It's becoming more regimented and less self-directed. 17 MarketResponse International IV. Overall Satisfaction with CDCS Program - Driving Factors - Better Allocation of Money - Money is being better allocated within the system The allocation of money is closely related to flexibility, but implies that the funding is going for products and services that more directly benefit the individual with a developmental disability. This has had a huge impact on many people's ability to obtain the things they need. Prior to CDCS, we were only able to receive 6 hours/week of direct care staff and $3000 - $5000 in adaptive equipment (depending on whether we were fully staffed). The staff was paid $8/hr. We had one staff person for a year, the rest of the time we had a variety of staff. We had gone for weeks without staff and we had to pay for all their training. Now, we are able to get 12 hours / week of staffing, 48 days respite, and $10,500 worth of equipment and environmental modifications and we've known our staff for three years. However, some people are extremely frustrated by the counties that promised them hope. They feel there is still a large bureaucracy and that the counties might be benefiting more than they are. The county got the money by making these promises to the federal government. Now they are playing god. They got all of us on the waiver because it was a huge savings to the county since they don't have to use county money to pay for PCA services. There are also issues with purchases being "defensible to the taxpayer", parental fees, caps on certain allocations such as activities or equipment purchases, and the reimbursement process which may have negatively affected people's responses to this statement. 18 MarketResponse International IV. Overall Satisfaction with CDCS Program - Driving Factors - Stress Reduction - This program had reduced my (or my family's) overall stress level -- life is easier Another important promise that this program had was an increased quality of life for the individuals and their families. Dealing with all the government agencies involved when you have a developmental disability can be overwhelming. Having a child with a developmental disability can add a lot of pressure onto a family. This program has helped many individuals and families achieve a quality of life they thought impossible. It has alleviated a ton of stress from our family. We are not just watching our son foundering. This had created a domino effect of stress though the family structure. The divorce rate is very high among families with children with developmental disabilities. I would expect to see a significant difference under this program. It gives you time to be a parent and not just a staff person. For some folks, however, the CDCS program has added a new layer of stress to an already difficult situation. They made promises. This is an emotional roller coaster. We work very hard to develop the plans and then half the stuff is refused. It's very draining. People get hope and then they take it away. 19 MarketResponse International IV. Overall Satisfaction with CDCS Program Individuals and families that have participated in the CDCS program for less than one year are less enthusiastic about the program than those that have been participating in the program for two or more years. Some of the largest variances in responses are driven by ethnicity and county of support. Results show that Whites and Asians are less enthusiastic than Black or African Americans, or other ethnic minorities (Native American and Hispanics). There is a relationship between ethnicity and county of support which may explain some of these differences. Dakota County has significantly higher ratings than the rest of the counties even though it has a higher percentage of "White only" respondents, who rated lower on satisfaction in this survey. 20 MarketResponse International IV. Overall Satisfaction with CDCS Program - Impact of individual budget/fee on Overall Satisfaction - At a total-sample level, there does not appear to be a correlation between the individual's annual budget, whether they pay a parental fee, and the amount of that fee, with the individual's overall satisfaction. This does not mean that the budget and fees are not important, only that there are other factors that carry more weight on overall satisfaction. 21 MarketResponse International V. Program Benefits 22 MarketResponse International V. PROGRAM BENEFITS - All Counties - Program Benefits Reduced stress level 4.4 .87 .447 Flexibility to meet specific needs 4.4 .82 .465 Select who works with me 4.4 .96 .271 Get out in the community more 4.4 .81 .344 My life routine has become more typical 4.3 .83 .344 Staff more personal care hours 4.3 .99 .283 Retain staff longer 4.3 .99 .309 Obtain higher quality staff 4.3 .96 .345 Money better allocated 4.2 .96 .486 I feel more empowered 4.1 .89 .329 Obtain more respite care 4.1 1.05 .246 Improved relationships with family members 4.1 .94 .307 Develop skills more quickly 4.0 .91 .314 Live where I choose 3.9 1.05 .137 Make necessary adaptations to home 3.8 1.04 .285 Overall cost has decreased 3.8 1.10 .247 Spend time with people w/o dev. dis. 3.7 1.10 .305 Obtain equipment 3.7 1.01 .264 All of the factors listed here were perceived as benefits of the program to a varying degree. The higher the mean, the stronger the agreement that this was a benefit of the CDCS program. The correlation with overall satisfaction, indicates how strongly related each benefit is to the overall satisfaction . The three benefits with the highest correlation, are the same three benefits that factor into the Problem Definition Tree -- the program reduces stress level, provides flexibility, and better allocates money within the system. A higher standard deviation indicates that there is a larger difference of opinion regarding the benefit. Various subgroups within the sample may perceive certain benefits differently -- which fits nicely into the self-determination philosophy of the program. The benefits with higher means are less likely to have high standard deviations because there is less room for variance (you can't select anything higher than a "5"). 23 MarketResponse International V. PROGRAM BENEFITS - Top Benefits by County - Get out in the community more 4.5 Flexibility to meet specific needs 4.4 Select who works with me 4.4 Obtain higher quality staff 4.4 Dakota and Ramsey counties had higher ratings for their top benefits than the other counties. Dakota has the strongest appreciation that money has been better allocated within the system, and was the only county to rate it in the top 4, which explains the high standard deviation for that factor at the total sample level. Staffing issues appear to be of particular benefit in Ramsey County, where they had much higher ratings than in the other counties, again explaining much of the variance at the total sample level. Although it doesn't appear in the top 4 for all other counties, there appears to be a greater appreciation for the ability-to-live-where-I-choose in counties outside of the metro area. Additionally, staffing is perceived as a lesser benefit of the program here. Additional analysis shows that individuals/families with children under 18 and those with higher degrees of disability have greater appreciation for adaptations and equipment, but those benefits are still rated relatively low by these groups. Mean Mean of 5 point scale / 5 = Strongly agree / 1 = Strongly disagree Top 4 Program Benefits - Hennepin County Flexibility to meet specific needs 4.7 Money better allocated 4.6 Get out in the community more 4.5 My life routine has become more typical 4.4 Mean Top 4 Program Benefits - Dakota County Select who works with me 4.7 Staff more personal care hours 4.6 Retain staff longer 4.6 Obtain higher quality staff 4.6 Mean Top 4 Program Benefits - Ramsey County Flexibility to meet specific needs 4.4 My life routine has become more typical 4.3 Reduced stress level 4.3 Get out in the community more 4.3 Mean Top 4 Program Benefits - All Other Counties 24 MarketResponse International Appendix: Respondent Profile 25 MarketResponse International Appendix: Respondent Profile - Summary - • Ethnically diverse sample: the survey has an ethnically diverse response making it valid to project the results to the entire population of CDCS program participants. • Changing set of needs: the demographics show that the newest people on CDCS are more likely to have autism and more likely to have higher household incomes than people who have been on the program for more than two years, which may indicate a changing set of participant needs. CDCS must be capable of adapting as the base of consumers it serves changes -- especially as CDCS rolls out to more rural communities with different needs than the metro area communities. • Ethnic differences between counties: there are significant differences in ethnic populations between the counties. Hennepin and Ramsey counties' high ethnic populations and numbers of individuals with English as a second language, increases the importance for flexibility in budgetary decision-making, as well as the need for simple, clear guidelines that can be easily explained and/or translated. • Inconsistent budgets / fee structures: According to respondents, budget and fee structures vary dramatically from one county to the next. As much as possible, confusion and/or differences in these structures should be minimized to support consistency of services from one county to another. 26 MarketResponse International Appendix: Respondent Profile - Age - What is the age of the person with n = 640 a developmental disability? % Under 10 yrs. 29 10-14 yrs. 19 15-18 yrs 11 19-24 yrs 17 25-34 yrs 13 35-44 yrs. 6 45+ yrs. 5 Mean age 18 Median age 15 The Consumer Directed Support Program has strong participation from families with children. Overall 60.1% of respondents are families with children 18 or under Minor Less than 19 years Adult 19 years or older Overall Age of Person with Developmental Disability n = 643 n = 383 n = 256 Who is responding to this survey? % % % Parent or family member 90 96 82 Other primary care giver 10 6 16 Person with developmental disability 14 5 27 Note: Respondents could select more than one option on this question, so totals will add to more than 100%. Also, some respondents may not have provided information regarding age of person with developmental disability and could not be categorized. 27 MarketResponse International Appendix: Respondent Profile - Degree and Nature of Disability - Mild Moderate Overall Degree of Disability n = 604 What is the nature of your disability? % % % % Total 100 18 44 38 Autism 29 8 16 6 Cerebral Palsy 22 5 7 11 Epilepsy 15 6 5 5 Head Injury 5 1 1 3 Mental Retardation 59 17 27 16 Other 32 5 16 14 Severe <1 Year 1-2 Years Overall Years of Participation in CDCS Program What is the nature of your disability? % % % % Total 100 52 35 13 Autism 29 35 25 19 Cerebral Palsy 22 23 22 18 Epilepsy 15 12 20 14 Head Injury 5 5 5 5 Mental Retardation 59 54 62 73 Other 32 32 32 33 >2 Years Note: Arrows ( ) indicate significant differences between means or percentages, at the 95% confidence level or more. There has been an increase in the number of program participants with autism in the past year. This may imply a changing set of needs compared to what the program faced prior to open enrollment in 2001. 28 MarketResponse International Appendix: Respondent Profile - County of Residence and Support - n= 629 n = 618 County % % Hennepin 44.8 48.1 Dakota 20.0 20.0 Ramsey 16.1 17.0 Olmsted 4.6 4.4 Washington 4.6 3.6 Anoka 2.2 0.3 Scott 1.1 1.0 Crow Wing 1.0 0.6 Houston 1.0 1.1 Morrison 1.0 1.0 Mower 0.8 0.8 Todd 0.5 0.5 Blue Earth 0.3 0.5 Carver 0.3 0.2 Rice 0.3 0.2 Steele 0.3 0.3 Wright 0.3 0.0 Chisago 0.2 0.0 Isanti 0.2 0.2 Pine 0.2 0.0 Sibley 0.2 0.0 CDCS is not yet a statewide program. Respondents living in 21 counties, and receiving supports from 17 counties, participated in this survey. 84.9% of respondents live in Hennepin, Dakota, and Ramsey counties, while 85.1% of respondents receive their support from these counties. County of Residence County of Support 29 MarketResponse International Appendix: Respondent Profile - Ethnicity - Ethnicity % % % % % % White only 89.4 80.5 77.9 89.3 72.5 93.4 Any Ethnic Minority 10.6 19.5 22.1 10.7 27.5 6.6 Any Black or African American 4.1 8.2 11.0 3.3 8.8 2.2 Any American Indian or Alaska Native 1.6 2.5 3.1 1.6 2.9 0.0 Any Asian 3.3 7.6 6.2 4.9 14.7 3.3 Any Hispanic 2.9 2.2 2.8 0.8 3.9 1.1 2000 Minnesota Census Total Survey Hennepin Dakota Ramsey Other County of Support There are obvious ethnic differences between the counties included in this sample. Ramsey and Hennepin counties have significantly higher ethnic minority participation in this program relative to Dakota and the other counties, which may imply a different set of individual needs driven by cultural issues. Additionally, 7.6% of respondents say that English is not their native language (11.5% in Ramsey County and 9.1% in Hennepin County) -- which creates language issues for county case managers and program documentation. Overall, the survey sample has a much higher ethnic minority representation than the 2000 Minnesota Census; but this may be due to the high percentage of respondents coming from Hennepin and Ramsey counties (60.9%), which are known to be more ethnically diverse than the rest of the state. Note: Arrows ( ) indicate significant differences between means or percentages, at the 95% confidence level or more. 30 MarketResponse International Appendix: Respondent Profile - Years of Participation / Budget - Note: Arrows ( ) indicate significant differences between means or percentages, at the 95% confidence level or more. % % % % % Less than 1 year 52.2 55.6 25.8 76.0 56.7 Between 1 year and 2 years 34.7 35.5 50.0 23.1 21.1 More than 2 years 13.1 8.9 24.2 1.0 22.2 Total Survey Hennepin Dakota Ramsey Other County of Support Years of participation in CDCS program Hennepin, Dakota, and Olmsted are the only counties with a significant number of individuals that have been participating in the program for more than two years. There was a large wave of new participants in this program in the past year, which peaked in the summer of 2001. % % % % % Less than $25,000 19.7 11.2 34.0 14.6 45.5 $25,000 - $31,999 19.7 20.5 17.5 15.7 21.8 $32,000 - $37,999 19.1 29.8 8.2 10.1 5.5 $38,000 - $45,999 18.7 15.9 15.5 39.3 3.6 $46,000 or more 22.0 22.5 23.7 20.2 21.8 Mean $36,121 $37,161 $34,567 $40,686 $29,229 Total Survey Hennepin Dakota Ramsey Other County of Support Current annual CDCS budget per individual According to survey respondents, Ramsey County has the largest individual budgets set for participants in the CDCS program. Level of disability is a key budgeting factor*, but the only significant differences in self-reported levels of disability by county are that Hennepin County has relatively more individuals that identify themselves as having "Moderate" levels, and the "Other" counties have relatively more "Mild" levels. Otherwise, levels of disability are comparable across counties. *Please note: There are significant differences in the average budget at the total level for the varying degrees of reported disability: "Mild" = $27,935 / "Moderate" = $33,825 / "Severe" = $42,725. 31 MarketResponse International Appendix: Respondent Profile - Household Income / Parental Fees - <1 Year 1-2 Years Overall Years of Participation in CDCS Program What is your total household income? % % % % Total 100 52 35 13 Under $35,000 46 40 51 55 $36,000 - $50,000 20 21 20 17 $51,000 - $75,000 18 21 12 15 $76,000 - $100,000 12 12 12 10 Over $100,000 5 6 5 3 >2 Years Note: Arrows ( ) indicate significant differences between means or percentages, at the 95% confidence level or more. There has been a large increase of households with higher incomes participating in this program in the past year. This may also indicate a changing set of needs. n = 618 n = 277 n = 121 n = 101 n = 88 % % % % % Do you pay an annual fee? 37.5 32.9 39.7 51.5 38.6 If so, how much? n = 232 n = 91 n = 48 n = 52 n = 34 $300 or less 37.6 36.5 24.4 39.5 54.9 $301 - $2099 21.1 17.6 24.4 25.6 19.4 $2100 - $4199 20.1 23.0 29.3 18.6 3.2 $4200 or more 21.1 23.0 22.0 16.3 22.6 Mean $2697 $2795 $2617 $3154 $2087 Std. Dev 3727 3559 2523 5155 3195 The TEFRA fee is not a requirement for CDCS, but is a requirement for MA and applies only to children. That said, parents often are under the impression that this fee is for participating in the CDCS program. Respondents report a wide range of how this fee is structured. Total Survey Hennepin Dakota Ramsey Other County of Support